I have been asked quite frequently this month if I'm happy about my new diagnoses, happy to know more of what's going on? That's a hard question to answer, truly, but the answer I give is kind of a yes-ish yeah sure when I'm asked. I mean, yeah, but…

The news I got is not pretty or happy or pleasant, not by any stretch of the imagination. The hypermobility, there is no treatment or cure other than palliative care, meaning that my excruciating, unmitigated pain will continue without cease or relief, most likely for the rest of my life. Not only that, but it comes with joint slippage and dislocations. Definitely debilitating. Then you have the connective tissue disease and the arthritis, both of which include pain of their own but can be treated. However, there is a distinct possibility of degeneration in time, especially with the arthritis, which is debilitating as well even if the pain is alleviated. It would be nice to have some of the pain taken care of and taken away, even if not all can be. All that, on top of the Hashimoto's and Addison's that must be closely managed if I'm to live normally or stay alive at all, the food allergies and IBS that can make my life a living hell in the blink of an eye and last for weeks at a time,  depression that sucks me into the deepest, darkest pits of blackness without warning or mercy, asthma that prevents me from hard exercise lest I suffocate on my own carbon dioxide, colitis and internal hemorrhoids that leave me doubled with agony and passing blood and bloody mucus… and by the way, do you know how scary it is to use the restroom and see great amounts of blood among your excretions?! Yeah. Bleeding internally is kinda terrifying, no matter how close to the exit it is. And among all that I still have the original fibromyalgia, which is a roller coaster ride of bullshit all on its own. (One of the theories I've read recently about the rise of the chronic illness population is that with the medical advances we have, the weak that would have died off in past times are now surviving to adulthood and bringing their illnesses with them. Looking at the list above, I really think that I would have died off, no? I mean, I barely survived birth.)

So the answer to that oft-asked question would have to be "no". No, I am not happy about these new diseases. Relieved? Yes. Vindicated? Totally. But happy? No. No, I am not fucking happy. I am oddly proud that I was right all this time, though. At the same time, I'm done. I'm so, so, so done. I've had a fever for the past I've lost count days, with the chills and exhaustion that comes with. It's been the best I can do to get most of my dishes into the kitchen sink, but forget about washing them. I've had a minuscule to zero amount of motivation for anything in what seems like forever, and I'm so sick of it! I could go on and on with the complaints, but I'm tired of things being wrong and they just are and it doesn't matter if I write about them or not. I fear I am defeated at last… though I know in my heart that it is only temporary. I will rally and return to myself, someday… but for now, I'm wiped out. I haven't the heart to muster anything but naps.

I'm considering going to my grandparent's for a few days to rest, to let them take care of me a little. I yearn for a caretaker often and heartily, someone to lighten my load a bit. It's hard enough being so damn sick, but trying to fight through the medical system and do my truncated version of daily life at the same time is one plate too many to spin it seems. Who doesn't want their mommy to smooth their hair and make them soup when they're sick? If I had a dedicated caretaker, I wouldn't' have to worry about rides so much either. I hate searching for rides when I have an appointment. It's so difficult, and I generally feel like I'm taking advantage of the goodwill of my friends. I'm worried that I'll wear out my welcome one of these days. I had a thought, though, while I finally began to do some research into the lighter aspects of arthritis (I've put off any research or dealings with any of the new diagnoses until now. I just kinda don't wanna know yet. Don't wanna deal with it. Bleh.), that maybe I'll be able to find a support group here in the area. Friends online are a lifeline to be sure, but in the flesh support is another thing entirely. It would be especially nice to find a couple of folk in my age range as well, but I think that's pushing my luck for Yuma.

So, back to being all blah and curling up with my fever and sweatpants and electric blanket and tea and movie. I've been watching both of the 300 movies tonight in keeping with my rather black mood. The blood and gore used to bother me terribly, but I've learned when to look away. Also, Corey's dark humor has rubbed off on me a bit and I find some things amusing that I didn't used to. I learn so much watching war movies with that man. I swear he's an encyclopedia of battle tactics, armor and weapons throughout the millennia. It's amazing, really. Can't wait until he is teaching all that interesting stuff to our kids.

I feel like I've been gone forever from the good ol' blog. It's only been 20 days, but that can be an eternity. I would explain everything that has gone down, but in the words of Inigo Montoya, "No, is too much. Let me sum up."

First of all, the appointment at the University was a rousing success! The doctor's bedside manner was professional but kind, and he was very thorough. I came away with several new diagnoses and a heart singing with vindication that it was not "just fibromyalgia" this whole time. I'm also dealing with Hypermobility Syndrome, Undifferentiated Connective Tissue Disease, and--get this-- Inflammatory Polyarthritis. Yep, that's right. I'm basically an arthritic old woman lol. So right now it's all still pretty vague. We don't have specifics as to what kind of arthritis or connective tissue disease I have, but they took, like, 10 vials of blood, I've gotten x-rays and ultrasounds of my hands, and I go back in February to learn more about what ails me. The Hypermobility makes sense, too. Even if it's not a part of EDS, it can be a thing unto itself and it still causes insane amounts of pain whether it's a standalone or part of the Syndrome. That's where my Intractable Pain comes from, and then I have the arthritic and connective disease pain exacerbating it. No wonder I'm in hell all of the time, why I require overly strong doses of pain medication to keep my body from crashing and burning and putting me in the hospital.

Let's see, what else? Ummm… yeah, I've pretty much spent a lot of this month in bed, sleeping. My friend took me to Tucson and we made a fun trip out of it, going to spend the night with another friend of mine in Sierra Vista, and that was cool. Mostly I've just been trying to survive, buying or making Christmas gifts where I could because I love love love giving people gifts.

Funny, it felt like I had so much stored up and ready to be poured out, but I guess that's my big news. I'm still having a hard time processing the implications of new diagnoses and such, and that's made it rough. In addition to that, Corey's youngest sister passed away a few weeks ago, and that's been really hard. The week that we were making arrangements was the most difficult of all, I think… and I've definitely been taking it harder than Corey. That's fairly normal though, I suppose, at least for us. He doesn't really go in for the whole "displays of emotion" thing, whereas I can't help it. We inherited her young snake (because her dad had no idea how to deal with a snake and didn't want to), and the first time we went to feed her it was a "pinkie", or a baby mouse that has no fur to speak of and hasn't opened its eyes yet. They're small, and we weren't sure how big of a mouse Lemon, the snake, could handle. I was very upset seeing the little guy being sacrificed like that-- it's always harder for me the younger they are-- and when Lemon attacked it wrong and tried to eat it while it was still alive (she's still young and not too good at this yet), I lost it and fled to the bedroom, sobbing. Corey came in a bit later and made sure I was alright, but truthfully he found it a bit amusing. He has some dark humor like that.

So it's kinda been a hell of a month. In addition to all of that, I had some not-very-good pain killers to try out this month, which is what led to the "surviving" part. The spending most of my time sleeping thing is, apparently, an automatic response to grief and excessive stress. However, Corey has been more affectionate and interested in our relationship. I think that the conversations we had made a difference for him, and I know that it got me thinking more deeply. I think the sudden loss has made him more attentive toward me as well, because he is sensitive toward my moods and making sure that I don't fall too far. I love that man, I really do.

Tomorrow is Christmas, and it'll be the first one in my life that I can recall not spending with my mom and siblings. Corey doesn't celebrate holidays, and I'm a bit of a grinch myself, but there are some things about certain holidays that I like and Christmas holds a few favorites. I like lights and Christmas trees and gifts and family. I wasn't able to make any of that happen this year, though, because I'm just too sick, exhausted, and whatever to put forth the effort. I will be having dinner with my grandparents tomorrow afternoon, so that's something. I'm pretty sure they have a gift for me, and I have something for them that I made, but they're really not putting effort into it either because all of the grandkids are gone or grown… kinda makes me sad. But my hopes are that by next Christmas I'll have the vigor to make some effort toward the things that I love, maybe even be able to travel again and see my folks. I really hope so. I hate living all the way across the country from them.

Today wasn't too bad, though. I got a massage, slept, ate cake, and watched How I Met Your Mother all wrapped up in my electric blanket on the couch. Not bad at all, I'd say, though much different than I've spent my Christmas Eve's in the past. I'm hoping to "make" Corey take me out to see some of the impressive Christmas lights tonight after he gets home from work. That'd be neat.

So today is the day. I'm headed to the University to see the good ol' doctors and hopefully, hopefully get some answers, maybe move forward an iota in this journey. My friend drove me, and we've been having a grand old time. She's a pretty new friend, but we've bonded quickly and have a lot in common. I really enjoy spending time with her, and she doesn't mind driving me these long distances so it's a really good symbiotic relationship.

It has been so long since I've gotten out of the house and just had fun, but when I'm out on road trips with Cheryl we have fun! Granted, they're medical road trips, but who cares? We went and got pedicures last night after getting into town because I've needed one desperately for some time. The bottoms of my feet and my heels were dried, cracked, peeling and bleeding but I can't reach my feet to take care of them anymore. (I can't soak in the tub any longer either, because I can't get myself up and out; it's too painful and difficult.) I haven't been able to bend like that for some time, just because of the spine and ribcage and stuff, and I have more difficulty bending my knees now. I ask Corey to help me now and then, but he blows me off because he doesn't want to do it, like most of the things I ask him to do for me. Massages are the most frequent request, but he finds them boring and so it doesn't happen. I'm hoping that he can learn to grow and change with the situation and become more proactive, more helpful. When we talk sometimes he says that he doesn't know what to do to help with my pain or other troubles, but that's not the truth. He knows, because I tell him. I ask for things, I don't just assume that he knows what I need. He just… doesn't wanna do it.

Cheryl and I have been talking about a very wide range of things on this trip and I've gotten to vent about the hurt and frustration I'm feeling in this season of life. It's not just one thing, of course, but a whole kaleidoscope of minor and major stings and slashes and bruises. I'm just trying to make things better. I hope it works. The best thing about our conversations that range all over is that not only are we so much alike but she understands from the chronic illness standpoint as well. Her disease came out of a long remission about 4 or 5 years ago, so she's feeling the sting of losing the normalcy and routine of the life that you lived and maybe loved. I'm going on 3 years and I still have a hard time making heads or tails of it. Yes, Friko, there is more to me than illness, but I just live those parts. I don't need to blog about them because they don't cause me pain, I don't need to sort through the feelings. A lot of who I used to be and what I used to do is gone, though, and I'm trying to figure out what fits in the gap. It hit me like a brick last week to realize how dependent I've been forced to become and that just galls. I was such an independent woman, a "doer", a travel across the country by myself, backpacking, hiking, counseling and administrating, housekeeping, job holding person who could drive herself to the store if she needed to. I can't do any of that anymore. I can hardly cook for myself these days, me who used to cook for our family on a daily basis. I'm a damn good cook, but it's too painful and exhausting for me to pull it off any longer.

So all of that is tumbling around in my mind like a rock polisher hard at work as I face this appointment. I have no idea what to expect, but I know what I'm hoping for. If they can actually definitively tell me what disease I have then logically there will be a course of treatment that will help me to at least stabilize, but hopefully to become functional again. That is what I am looking forward to. I resent my dependence and so does Corey. He's resorted to mechanical functioning and nothing I do can bring him out of his shell. He won't even say "I love you" unless I say it first; it's just a response. He doesn't kiss me, I have to go up and kiss him. It's like he doesn't want to interact with me anymore beyond a superficial basis-- I kiss him and tell him I love him when he goes to work, I kiss him and tell him I'm glad he's home when he comes home (all true, by the way). We'll fix ourselves something to eat, watch a few episodes of whatever show we're watching together, take a walk for half an hour or so, and then he retreats to his man cave to play computer games and I do whatever it is I need to do (sleep, read, slowly accomplish some chores) until it's time to go to bed. He doesn't cuddle with me in bed anymore, either. Lately there's been a teeny bit more of that, but it's because I cuddle him, wrapping an arm around him or entwining our feet like we used to do…

I don't know if it's the truth, but I feel like the health and happiness of our marriage is intrinsically tied to the state of my health. If I can get a good diagnosis and course of treatment, I can get somewhat better. Then Corey won't be as stressed or freaked or whatever he is, and he'll return some closeness, maybe? Hopefully? I'm reminded of a time we were talking about something or other and he said, partially in jest I hope/think, "I don't want to deal with cripples," or some such. I just kind of laughed, patted him on the shoulder and told him, "Sweetie… you're married to one."

I tend to get my hopes too far up in the sky and then bemusedly wander around, dripping with my own blood, when those hopes fracture and come crashing down on me to crush and transfix me. It's kind of a weakness. But is a diagnosis of what is clearly a destructive disease really that big of a dream? I mean… shouldn't it just be kind of a realistic thing to expect from life? And so I welcome you to the times and trials of the chronic illness patient.

(If you want to hear a neat song about high hopes, check out Sinatra's song about high, apple pie in the sky hopes. It's adorable.)

I don't even know where to start on this topic. Do you know how many times I've been so devastated, ticked off, and just gutted when I find out that a person or a couple is not, underneath, the image that they presented? I can't even count. So many, many, many times I've thought that I've found a healthy and happily married couple to look up to, only to find through the course of time that they are broken underneath-- bitter fighting, ugly resentments or cold silence and miles and miles of distance, if not outright abuse. The Stottlemyers and my grandparents are pretty much the only examples I have had of functioning marriages, and I didn't even realize that my grandparents' relationship was all that healthy until very recent years.

So get this-- in our circle of friends, Corey and I are the example, the Westley and the Buttercup, the happy, healthy, functioning marriage. And it's true. It is. Or, at least, it was… because how do you admit to yourself that you're not happy with where things are at in your marriage, much less bring it up to your partner? But that's exactly what I did this weekend, and I feel good about it. We're talking, our communication is still wide open and blazing, and it's not like we're going to split up at all or anything. It's just… there's this distance. And there's these walls. There isn't sex anymore, or purposeless flirting… intimacy has fled, of a sort. I feel like we're just roommates at this point in so many ways, but I still love him on a very fundamental level and it still sweeps me away all the time. I know he still loves me and it shines through. (In more subtle ways than I'd like, but it's there. It's definitely there.) Plus he says it at least once a day, so there's that. Heh.

The times we've talked about it ("it" being the change in our relationship), it's basically presented as the set of diseases I have and the stress of all that is like a big ball of blah that has settled upon us and is glopping all over us like The Blob. What Corey hates the most is what these diseases have done to me. He hates seeing the change, the loss of independence, and he also kinda feels that maybe I'm a different person now than the person he married and he thinks he should feel bad about feeling that, like maybe he shouldn't feel that way, and the biggest thing is that he tries to keep all of this from me because he knows that I internalize things more than I ought to because of my upbringing and background. He thinks that I would take what he says and blame myself severely, and he doesn't want me to endure that kind of pain or to poison my mind and heart like that. He is so sure that I will blame myself and over-feel it and get depressed or so; it's sweet that he wants to protect me, but it is distancing us.

So I almost feel like I've become what I despise-- the so called healthy, happy marriage that is just a veneer for trouble underneath. I know that things aren't where either of us would like them to be, but they're not abysmal, either. It's very true, the incredible stress that chronic illness brings can break you down and tear you apart, but we are not going anywhere. Things are hard-- not only do we have the diseases and my disability and constant medical stuff to deal with, in addition to the day in, day out symptoms-- but we have major financial stress to battle with as well. I'm just super glad that we don't have debt to deal with beyond a credit card each and whatever outstanding medical bills I've got right now. It's just that my medical expenses totally ate up Corey's extra cushion money and now we're living paycheck to paycheck, hand to mouth. It's like every time he's about to even out, something comes along that screws everything up and takes all of the potential extra money (which is never more than one or two hundred dollars).

True story: I emailed my stepdad last week and begged him for money (again) to cover medical bills and such, as usual, but I also had to ask him for grocery money because Corey had paid the mortgage and all of our other bills-- we don't have anything on the docket that is extraneous, nothing indulgent, just basic life necessities-- and he had $11 in his bank account to last us 1 1/2 weeks until his next paycheck. I believe that's the lowest we've hit so far, honestly, but it was truly unnerving. I'm not sure I know the meaning of "disposable income" anymore. From time to time I'm still able to sneak a treat in for myself here and there, but it's in the form of a $2 muffin or a new bottle of nail polish, something like that. Corey operates like that as well, but he indulges far less often. We just need an edge of some sort, just something to help us get ahead and we could do it; I know we could. That's why we are hoping so hard that I get approved for disability-- it could be that edge, that little thing that turns things around for us. I was excited when I established the Tiara Fund and donations came trickling in, but that has completely dried up no matter how much I share the link. I really did think for a minute there that the Tiara Fund was going to be the thing that turned it around for us.

I won't lie-- our life is really frickin' stressful, and I know that's why we have faded to a facade, our vibrancy dulled by the cruel, grinding rhythm of sickness and hardship. I'd like to get help for us, but where do you turn when you are the healthiest relationship you know, even if you're kinda broken? And chronic illness issues within a marriage are so, so different from other kinds of issues. I don't know what to do. I really don't. I guess all we can do is keep the communication open, keep talking, and just hang on for dear life. I'm beginning to think that I've perfected the death grip, really, but I know with a sickening lurch to my gut that just as soon as I think things have gotten as bad as they will… shit happens. I've got doctor's appointments coming up to hopefully diagnose the extra stuff beyond fibromyalgia that I'm dealing with, and I have a cold feeling of dread that I won't like the answers that I get. But then, I feel that way about everything related to my health these days anyway…

I don't want to be a facade. I really, really don't, and as a person I think I've accomplished a marvelous level of authenticity so far (considering where I've come from and the shit I've had to wade through to get here), but as a couple… yeah, I think that for now it's all about the death grip.

I broke down crying today during my appointment with my "lady doctor". (Yeah, I could just say gynecologist, but I honestly like the phrase "lady doctor" better. It sounds more elegant, don't you think?") Well, not breaking down as in sobbing, like buckets of tears, but I did cry and she handed me the tissues and I felt a little embarrassed because I try to keep my crying to a minimum, and definitely private and not in front of my doctors. She was very understanding, though-- I love having her as a doctor. I only see her once a year, but she's awesome.

She asked what had transpired in the past year, so I gave her a quick rundown on my health, on the status of my marriage, of the stress that we are under (and that's where I started crying), etc. She was very sympathetic and encouraging, and she said that she hates the diagnosis of fibro the most for her patients because it just causes so much pain and horror in their lives. She is a total believer in fibro and how it can wreck a life, and we even had a little chat about pregnancy and fibro, the risks and challenges, etc. She really wished me well and had good wishes for me that I would find out, through the doctors and tests, what on earth is really going on so we can treat this and get it under control.

Get this: even my gynecologist, after just a brief rundown of my health changes in the last year, says straight out that I am dealing with something beyond fibromyalgia. There is another disease at play here and we haven't figured it out yet, but it is continuing to drag me down and make life feel more and more impossible. I want to find the line between reality and complaining, but I also just want to vent and explode into the atmosphere with a supersonic silent scream at how hard every day is, how much I miss my old life, and how sick I feel every day and night, how much acute agony I chronically endure. Since I got taken off of the hydroxychloroquine until my appointment with my rheumatologist in Phoenix, my joints have jumped in on the pain parade full force, even more so than before. I am not aware of a single joint in my body that doesn't ache on a near constant basis, even without use or pressure.

I hardly do hot baths anymore because putting weight on my hands to lever myself up and out of the tub is almost unbearable; walking is painful at all times because of my knees, ankles, and all the articulations in my feet. Did I mention that I received news at my last pain doc appointment that I basically have gout?! I'm a 26 year old woman. How the fuck can I have gout?! So I got this paper that lays out the foods I can and shouldn't eat, but I'd just started to revamp my diet a bit and make it healthier so I can lose weight hopefully, but the gout paper basically told me to continue eating the way that I have been! Just with more veggies. I think it's just going to be trial and error, really. This gout thing is in conjunction with my pain doc's sincere conviction that I have a type of rheumatoid arthritis that doesn't show up on the AI blood tests, but that there are definite ways of diagnosing. That's a very valid theory, especially considering my poor joints now that I'm off of the lupus/RA drug and doing so much more poorly. (My friend with the same type of RA as the doc is postulating takes hydroxychloroquine for it and it helps her. We both think that, you know, if I'm taking an RA drug and it's helping and then I get off of it and I worsen, that combined with other clear symptoms makes a pretty strong case for seronegative RA.)

By the way, a blog that I follow regularly, chroniccurve, has an entire post called Seronegativity for Dummies, and I strongly suggest you check it out if you're at all curious about what the heck I'm talking about. She's a great writer, a strong advocate, and does not spread misinformation. Best of all? She's totally my age or maybe a bit younger, a peer! I love it.

I am looking forward to my appointment the first week of December at the rheumatology department of the University of Arizona. I hope it will be a good and productive experience. Yes, I'd prefer that the doctors are pleasant and funny and good looking as well as intelligent and diligent, but honestly all of that falls on the back burner when I regard information and a correct diagnosis. What would you do for a Klondike bar? I think the question is, what would you do for a real live answer? If I just had a reason for my every increasing pain and continuing fatigue, it might make it easier to bear.

I realized this week that even though he loves me and he is totally there for me and is my #1 supporter, sees everything… Corey will never really understand what life is like for me, what it's like to be sick like this, none of that. (Random insert, but I'm really tired and falling asleep while typing this, so I closed my eyes for a very long blink and had a momentary dream/vision/hallucination of passing out and being lowered to the ground by my group of friends… the ground that was made of various kinds of ice cream. Woooooow.) So, back to Corey. See, he rarely even gets sick, and any pain he's experienced has been acute in nature, not to mention that he's good at putting mind over matter and ignoring the discomfort. Sometime I'll have to share the story of when he sprained his ankle at school in the morning, walked on it the entire day without seeing the nurse, and then walked home. Crazy dude. Crazy! But because of his lack of experience with prolonged pain and sickness, he really has no vantage point from which to really see into my experience and sort of assimilate it into his own, to pretend that he's me in a way.

Honestly, that realization was a little bit devastating to me. I knew he had my back but I had always just kind of assumed that he knew exactly what I was dealing with and was choosing to be dense at times. Oops. Heh. But no, he doesn't truly get it, and that's okay. Who does, really, unless they've lived it? I mean… I know what it's like to have my bones feel like they're filled with fire and etched with acid; I know where the articulation of my joints are because the ache is particularly sharp, thick, and overwhelming there. I know what it's like to literally be crippled by pain and not be able to take a step forward or stand at all, even sit, due to epic levels of concentrated pain in one area or another. I know what it's like to suddenly be dizzy and lose my footing on a completely flat surface. I know the jolting awake from a presumably sound sleep for no apparent reason (or because the pain followed you into your dream and it got too overwhelming), maybe just once that night, or maybe again and again and again, every hour or half hour, and I know the feeling of overwhelming gratefulness that I don't have to try to drag my invisibly battered and bruised carcass into work every day. Objects fly from my hands when a twitch attack strikes, I can't walk, and it jerks and jolts already painful muscles and tendons and joints. I need the walker to walk, especially with my very low back having decided to give up on me in excruciating spasms and weakness at totally random intervals, but my hands hurt badly from the weight on them as I push myself along with the walker and from having to grip the handles the whole time.

On the other hand, that same walker allows me independence that I would not have otherwise, and it allows me to walk a half an hour or more every night, pain or no pain. It's cleansing, this walking, and Corey joins me for that, too. It's during the walk, during the errands on his day off, that I realize he will never truly get it unless it happens to him. Good god, may it never happen to him. He hasn't the patience or the proper personality to deal with such unrelenting pain and the constant onslaught of old and new symptoms that always keep you off balance just a little. He does not have the good humor to laugh through or about a particularly painful day or hour or situation. He turns into a grouchy, mean person when subjected to large amounts of pain that are "semi-chronic" (lasting for more than a day). I've seen it first hand! So really, it's better for everyone involved that I'm the sick one, not him.

As you can see, there is much for me to think about and feel when it comes to my current "lifestyle". I didn't choose it but I do have to make the best of it because it's not going away, not anytime soon by my guess, and I'd rather not waste a huge chunk of my life just waiting to get better so I can begin being the person that I want to and doing the things that I want to do. Hell no. Corey summed it up pretty aptly when he said that there was a lot of "trauma" around the change in my life and my sicknesses, and he's right. There is a lot of trauma, stuff that I need to work through, and I really want to. I tried a particular place this week that seemed promising based on a lead from Bisbee when I was visiting the other week, but the people here were somewhat rude and quite unhelpful and it did not pan out at all. No counseling for me at this time; can't afford to add another doctor to the mix right now. Not when every penny of what I use to pay my doctors and get prescriptions and such is a gift from family or friends or somebody. God I hope I can sell these crafts that I've made somehow. It's the only way I can think to make some money right now that's within my physical capabilities. I haven't made much in the past few weeks, though. Been too… depressed. Sick. Totally unmotivated on top of feeling so feverish and flu like and drained and just blah. I'm still super shocked that I actually had a great time in Tucson and wasn't all that ill.

I blame our mattress, actually. My sister in law's mattress helped keep my pain down, I think, but ours beats me up like hell. We need either a new mattress or one of those memory foam topper thingies for it, and we also need new pillows, like, SO bad. Have for a couple of years now. Anyway, I can barely keep my eyes open, and I'm just rambling at this point in any event. Hit me up if you wanna buy us a mattress or pillows, or if you wanna buy some crafts, yeah? Keychains, beaded autumn wall hangings, necklaces, earrings, painted prescription bottles, and more. Maybe I'll do pictures some time. Maybe. If I remember… and feel like it. Heh.

Also, I was just hit with a strong but irrational desire to go to the zoo. What's that about?

So guess what, folks? The Princess (that's me!) went on vacation. An honest to goodness, get away from it all vacation. I really, really did! It would in no way have been possible without my amazing sister in law, who I did not know cared for me as deeply as she does, but she spoiled me in almost every fashion imaginable.

First off, she had started saving for this weeks and weeks ago, and while I was there I paid my own way on things twice. Twice. In an entire week of going places and seeing things and doing stuff and buying food! Second, she was very careful to keep my physical labor to a minimum, to make sure that I rested as much as possible, and that I was able to access the places we visited. She carried all of my luggage and would only let me carry pillows and the like, even loading and unloading my walker every time we got in or out of the car! I must admit, it was pretty fantastic to have a sherpa, as I jokingly called her throughout our time together.

It was a bit of a whirlwind trip, but it was so incredibly nice to have no responsibilities, to not have to pay for anything, to have fun things to look forward to every day yet not have any kind of a rigid schedule so that our whims and my health could lead the way as to our activities, and to just kind of… well, I have this mental image of, like, my normal life and home and such with this blank white cutout space in my shape throughout the entire week where I would normally be during that time, and the cutout of me was pasted into this whole other life and reality for a week. Does that even make sense? It was so different from how my life usually proceeds that it felt like almost an entirely different reality, which is what vacation is supposed to be, right?

It felt restorative, rejuvenating, and soothing. I was the closest that I've been to my pre-Spoonie self than I've been in years. Granted, it took a lot of assistance to get that, but that doesn't diminish the experience at all. It's a series of memories that I will cherish for a long time to come, I can guarantee that.

Our week went something like this…

Sunday: Colleen (sister in law) arrives and we more or less intend to leave that day, but don't because I'm feeling poorly and it takes me forever to pack, and also what's the rush? We make a list and Colleen packs for me, which is awesome.

Monday: We leave in the morning after stopping by the local muffin store (Yum-azing!), I sleep all the way to Tucson. We go grocery shopping, Colleen cooks supper, take a walk around University, get locked out of house upon return and Colleen ends up breaking in through a window that was unlocked.

Tuesday: Visit an art store for shopping, go clothes shopping for me at a thrift store nearby, have dinner with Colleen's best friends and I have my first margarita. The night is capped with my first hookah smoke and we talk late into the night.

Wednesday: Walk the main drag near the University and visit the tea house we've had our eye on, go to dinner at a fancy place and run low on time, get trapped in the parking garage because of a faulty ticket and barely make the play we've been looking forward to seeing (and pre-purchased tickets for). End the night by returning to the main drag and hanging out at a coffee shop smoking hookah and eating Mediterranean pastries until the shop closes late.

Thursday: Drive to town an hour or so away to spend a few days with my friend Rose. She was interning with the Victim Rights department during the trial that put my molester in prison, and so she was sort of a victim advocate for me and we've kept in touch and maintained a friendship since. Get settled, I get a haircut and Rose takes me on a mini tour of the Army Fort and beautiful surrounding scenery. I fall asleep in the car and nap upon our return, wake to find company over for dinner, and we all hang out until dispersing for bed some time after company leaves.

Friday: Take a 2 mile walk with Rose (yeah, that's right! I'm fuckin' proud of myself!!!), nap briefly before we all pile in and drive to Bisbee to check out the stores and sights. Colleen buys her first "real" piece of art and is now an official adult, and I find some amazing souvenirs and a smaller cast iron skillet of a size we don't already own that I take home for Corey. (He likes it a lot, and used it for the first time tonight to make a sort of omelette.) After coming home, Rose's "Gathering Of The Awesome" party starts a while later, consisting of awesome women that she knows and invited to an evening of yummy light food, good drinks, good conversation and company, and a fun art activity that was also insightful and connecting.

Saturday: Leave Rose's and head back to Colleen's house, go grocery shopping for afternoon picnic planned. I nap for a few hours, then she, I, and one of her best friends that we went to dinner with go up Mount Lemmon and have a picnic, sort of start a fire to keep ourselves warm, and watch the sunset on the drive back down the mountain.

Sunday: We both sleep in, and eventually she packs up the car and takes me back to Yuma but leaves shortly after because of work the next day.

I was feeling pretty good throughout the week, at least as far as "good" for me goes, but as the week went on I could feel myself wearing out. By Friday night I was running a mildly low grade fever and felt pretty gross. Saturday night I declined a proposed meet up with a friend of Colleen's in favor of staying in bed because I felt shitty, and Monday, the day after I got back, I pretty much did nothing but sleep in hour-to-several-hour increments for about 24 hours. I'm still recovering, but part of it is that I don't have that medication that helps so much with the stiffness and pain in my joints anymore, so I just feel more arthritic and whatever than usual anyway. Also, period should be coming soon, and I'm always exhausted the week before my period and sleep more than usual, so I'm not surprised there, either.

I cheated a lot with allergens on vacation, so I'm returning to being a "good girl"… but oh man, I had some of the best food in a long time. Have you ever had fresh sopapillas? Then you are missing out on the culinary equivalent of salvation for your soul, I swear to you. They are so. good. I've also been on a huge muffin craving kick since we hit that muffin place on the way out of town. I had forgotten what I was missing, but now I am constantly reminded of my suffering due to lack. Alas, alack, woe is me, woe betide, and all that sorrowful jazz…

It was a good trip. It was a very good trip. I don't expect to have an experience like that again anytime soon, but I will surely treasure it. I feel different somehow from having  had the experience, but I'll think on that more later. I am so indebted to my ladies, Rose and Colleen. My gratitude knows no bounds. I know that they really went above and beyond for me… and yet for them, I'm sure it seems somewhat of a simple matter. It's funny how perspective works. From my perspective, it was a chance to live life again, to have fun and forget the frustrations and complexities of trying to juggle doctor's appointments and bills and finding rides and medication snafus and all that… to simply be a young woman again and enjoy things… to just have fun, pure and simple! From their perspective, it was doing things that maybe they don't get to do every day but have been wanting to, but it wasn't particularly mind-altering I don't think. It was pretty much business as normal, but on vacation time.

Regardless of who felt what, there is one thing that we should all be feeling right now, and that's pride. Pride in me, of course. Why? Because it's only been 3 days since I got home, and I'm fully unpacked! Yeah, baby! (This is fairly unheard of, just for context.) Now that I'm home, back to responsibilities, I feel a little better equipped to handle them now that I'm not so frazzled and frayed because I had a pleasant break. On the other hand, it makes me not want to deal with real life at all anymore and just continually live the vacation life on someone else's dime… Heh. If only, right?

Corey came home a day early from hunting! So he's been around as I've been slowly wending my way through the day with the intent to pack interspersed with frequent naps. I'm happy that I got to see him before I take off for a week, but it would have been okay had we missed each other like we thought we were going to as well.

I was in bed, just on the edge of slipping into the depths of real sleep after a phone call had awoken me, and I heard the front door open amidst shuffling sounds and a muted jangling of keys. Confession: I can't stand to be encumbered by layers of fabric when I sleep, so I didn't feel that I could jump up to investigate in naught but my birthday suit! I lay there drowsily alert, trying to decipher activity based on the carrying sounds when Corey breezed into the room, all salty, sweaty woodsmoke smell and smiles, bending over the bed to kiss me. It was a warm kiss, but something was awry-- he was eating  licorice!!! (I despise and detest licorice, especially the black kind! Oh, and he knows this quite well.) I determinedly kissed him anyway, but exclaimed afterward how cruel and gross he was, and he grinned and laughed and got a kick out of that.

The day has been a long, slow one. Much resting on my part, and the essential absence of any kind of deadline for being packed or leaving today has been a welcome knowledge. I fell in the shower today when I tried to sit on the stool I have. It slipped out from underneath me and I crashed down, banging my back on the edge of the stool's wooden seat and wrenching my hip a bit. I suppose I shrieked amidst the resounding thump and crash of the fall, so Corey came in to see if I was okay and found me huddled on the floor of the tub, unable to get up by myself and curled in a painful little ball repeating my mantra of "Owwwww, owwwww, ouch, owwww….!" He helped pull me to my feet and I was suddenly incredibly grateful that he'd come back a day early.

My sister in law accompanied me to dinner with the friends of mine that I celebrate the Anniversary with, and we all had a nice early supper at Olive Garden to celebrate the Anniversary. Everyone got along well, which is good. I was not really worried because C is a very charismatic and personable person, but she's not religious at all and my friends are, so I was hoping there wouldn't be a clash of interests or basic world views. We stayed away from the religion topic, though, and all was hale and hearty.

After coming home and all relaxing with books and television shows of choice for a while, I convinced Corey to come cuddle with me as I was going to be falling asleep for a bit (maybe the whole night, maybe just a few hours? I have no clue at this point, though I'm rather hoping for a whole night's sleep). We lay there in the dark for a bit, talking about his hunting trip and how it went, but soon the conversation ebbed away and I found myself dozing off. Just about then Corey got up and left the bed and I was very disappointed that he'd get up and leave just as I as falling asleep. What a super awkward moment to disappear, right? I vocalized my disappointment, but it turns out that he was just closing the door that had been propped open so the cats could come and go as they please. He came back to bed to be with me again and, well, all I have to say is that conjugal relations are awesome, and even if it's been a long time and you feel like a broken record by coming on to your partner again and again without apparent success, keep at it. Keep at it only if you mean it, though; when the time is right a lovely experience will unfold.

I'm gonna come straight out with an honest, brutal truth here that some people may find uncomfortable talking about: stress kills sex drives, and lowers intimacy if you let it. Truthfully, it has been a long time between the last time we were intimate and this time, and that's because we are frazzled a great deal of the time. Sex involves and requires a lot of emotions, and a lot of energy too, and when you're dealing with a mountain of stress being poured over you like a thick, viscous pudding it's really hard to dig up the motivation to do something that isn't "vegging", you know? For me, having sex actually helps me to cope with stress better and it alleviates my depression and anxiety to a degree, but my husband finds himself more drained by the act than I do. I'm revitalized by sex, but he is exhausted. I have a higher, more demanding libido than he does even when things are normal and especially so when things are stressful and out of sync, so that's something that we have both become aware of and keep in mind. It took communication to reach these conclusions, but there was a period of time where I was hurt and confused by his constant rebuffing of my advances; I thought that he no longer wanted me in that way because I had gotten sick, or that maybe he didn't find me attractive anymore, or that he was afraid to hurt me, or that he really just didn't care about me much. I was so wrong, but you can understand how an almost daily (or several times daily) rejection of a flirtatious sexual advance can give the impression that one is unwanted by and unattractive to the object of the flirtation.

Sex can be a huge source of assumptions, miscommunication, frustration, and simmering resentment, anger, and bitterness, and sometimes it's awkward to talk about but you just gotta do it for the health of your relationship. I'm serious. (Plus once you get the kinks worked out and both partners feel understood and validated, you can get some serious toe curling action up in there! If that isn't worth it, I don't know what is.)

Now I'm going to attempt to sleep (again, for however long) and ignore the steadily mounting pain. Falling in the shower and banging yourself up does nothing to alleviate an already worsening flare. Maybe the fatigue will overpower the pain, yeah? Funny how you can play one symptom against another to achieve a benefit to yourself, huh? The Monopoly of Illness, or some such.

It's so strange to be filled with this overwhelming feeling of nostalgia, as if I am overflowing with a past sense of myself. I swear that these past few days, I've been transported to my years as a teenager. I couldn't say why, absolutely cannot put my finger on it, but… I still feel like that old ghost of myself, wandering around empty halls in search of…?

It could be the crazed nightmares, the fact that Corey is gone and not around "all the time" like he is normally. That's quite reminiscent of my teen years. Most of my dreams have been about lack or loss of control, about danger and physical harm and incidences of great stress. Could be that I feel a little lost, a lot exhausted, very unsure of things and myself and just plain done. Tired of being an adult, so I regress?

It's strange, falling asleep at 8 pm because I'm wiped (again, and after being awake only a few hours) and waking up at 1 am, shuffling out to the familiar scents of my own home but feeling disoriented, empty and weepy somehow, as though disaster has struck elsewhere and yet I'm still affected.

I'm wrapped up in a blanket on the couch, watching Dirty Dancing for comfort. Something about the music and the sight of Patrick Swayze grinding his hips every which way is soothing ;)

I have this sort of premonition feeling that this trip I'm taking in a day or two is going to be important for me, personally, for my personal growth somehow. I haven't really gone off on my own since I got really sick, so that could be part of this strange feeling and the anticipation/loneliness that I'm feeling.

I tell you, it is just strange to feel a decade younger again all of a sudden… especially when that past self and current self are overflowing with a sense of… um… whatever it is? Above and through it all, though, is the same sense I had as a teenager, and that is a desperate and deep craving to be loved intensely and obviously, wholly and completely, in a way that makes me feel totally safe and surrounded, like a song or a movie. Totally unrealistic I'm sure, but the craving is still there (and probably exacerbated by a month plus of celibacy). And it's been there my whole life, the stage of uncertainty set by abuse and neglect and a casual indifference of my specialness. So we're back to that, and I hope this time to move through it with strength and purpose, or at least just an awareness.

I really don't care to be a teenager again. Too much uncertainty. It's funny how we pretend that it goes away when we become adults. I don't think it ever does, really… Heh.

I'm sorry I've been so sketchy at writing. It's just that usually I'm so tired and my brain is so fuzzed up that it's hard for me to keep a train of thought going, even during conversation. In addition to that, it seems like things are both not happening at all and yet so many things are happening that I don't have the gumption to write it out. Any feels I have these days I usually cry out in the tub, or into a pillow, or onto Corey's shoulder. (I've also decided, what's up with the aliases? It's hard for me to keep track of them now, and internet anonymity is really kinda not much of a thing these days unless you work really hard at it and I'm just not willing to put that much effort into it anymore.)

I've made some friends, new friends, and one of them drove me to the pain doc in LA yesterday. It was a fun experience… she's basically like a version of myself in 20 years, so we get on great. Anyway, the doc mentioned it last month, but this month he was really emphatic that he thinks I'm dealing with seronegative arthritis, which is arthritis that doesn't show up on blood tests. Next month I've got an appointment in Tucson at the University with the rheumatology department there for a diagnosis. I was thinking EDSH, maybe, but now there's this question of arthritis… maybe it's both? Who knows, really. Maybe it's "just" hypermobility syndrome and also arthritis. I dunno. Whatever the case, I think things are finally starting to get figured out, and that's a relief.

I am so tired of trying to wrangle all of these doctors and appointments and trying to get all of the doctors to work together and communicate and send the dang files when they're supposed to and, just… my goodness. So done.

But I have a "vacation" of sorts coming up in a few days. My sister in law is coming to pick me up and I'm going to spend the better part of a week in Tucson with her and an artist friend, just kicking back and enjoying the sights and being a tourist. Both of them have a clear grasp of my health status and my limitations, and I'm so very grateful for that. I wish I didn't have so many damn limitations, but it is what it is. I'm looking forward to a chance to go have fun, to be out and about and also have reliable rides the entire time, to more or less be catered to I guess? And the last time I took a trip that wasn't for a doctor's appointment was in March, when we went to the Renaissance Festival. Seriously.

Marriage. It's been strained in ways, because of our tight, tight finances. I was denied disability and I'm still working on finding an attorney to appeal it. I had a lead but that closed down today, so I have to keep searching. I only have 30 days. The stress has been hard on both of us, but it's also led us to be very, very honest with one another, to have some good talks, and we've had a lot of fun together as well. There are pros and cons both, as with all things. One reason I had been somewhat unhappy a while back is because I had fallen into that tempting trap of comparing us with others. First of all, we are a unique couple, and healthier than pretty much any other couple I know (neither of us could think of a healthy marriage that we could turn to for mentorship; isn't that horrifically sad?!), but more than that we are dealing with chronic illness and a terribly unique situation. There is no manual for this. We're making it up as we go. Sometimes it's rougher and tougher than others and I cry a lot and feel sad and lonely and unfulfilled, but those times seem to be further and farther between now, especially once I embraced the fact that we have to make our own journey and I have to look for the ways that Corey uniquely expresses his love toward me. He's not a writer or a poet or a very traditionally romantic guy. I'm not going to get grand gestures or sweet notes or thoughtful surprises. He will, however, drive me to and pick me up from a doctor's appointment on a day that he has called in sick (which he never) does because I am not well enough to drive myself any more except on very rare, desperate occasions. He got up earlier than he wanted, while sick, and drove me to the appointment and picked me up, all while not feeling good. THAT, ladies and gentlemen, is love. So, stuff like that. I would love flowers, sure, and he likes to get them for me, but we can't afford that right now. We are having an alarmingly difficult time with basic bills and food, as hard as that is to admit. He is kind of depending on the hope of my getting disability to help us pull through in the long run, but I found out today that I just don't qualify at all for SSDI. I didn't work long enough and recently enough to get credit for that. I really hope I can get SSI, because it's our last hope, really. If I can't get that, I don't know what we're going to do. I just don't. I've been making some crafts in the hope of selling them, but the price for a stall at the swap meets is outrageous! I'm still hoping to sell them, though. That may help a bit on the finance side, but if nothing else then at least it's been a good outlet for me.

There's a lot of feeling overwhelmed for me these days; overwhelmed with feeling lousy almost every second of the day, overwhelmed with juggling doctor's visits and records and lab tests, overwhelmed with paying for all of this doctor stuff, overwhelmed with trying to "be sick right" and eat the right things and take the right supplements and meds and exercise and do everything that I can to keep my health up so it's not my fault, overwhelmed with sorrow that my financially stable husband is now struggling to handle basic life costs because his wife is so high maintenance to just keep alive and semi-functioning.

But, you know, there's also good stuff. There's always good stuff. Life isn't entirely bad, except when I'm going through a particularly bad depression slump, lol. I suppose that instead of feeling pressured to write about everything going on at the moment maybe I should just pop in and write little blurbs here and there, like small anecdotes that give a picture into my actual life rather than just my thought and emotional life. Hell, maybe one of these days I'll actually put together a coherent blog post on a topic, rather than just rambling! Perhaps not. I don't think that's the type of blogger I am, at least not on this blog. This one is for me to come and feeling-vomit and walk away feeling a bit lighter.

Speaking of lighter… I am gaining weight, so much weight, and I can't seem to stop it. I am revising my diet, exercising more (yes, even with the pain!!), trying to eat less… and still I've gained 18 lbs in the last month?! What the hell is that?!?! I don't know what's wrong, I don't' know why this is happening, but I dislike it. I hate it. I don't want to be fat, but I am. Today, though, I looked in the mirror after dressing and I thought to myself, "I am not going to try to look like a skinny girl because I'm not; I'm a big girl. I am a big girl, but I'm still pretty." And I actually felt that, I believed it, and it was a nice place to be mentally.

The cats are going stir crazy because I've kept them inside for the past half a weekish, due to Halloween. People do awful stuff to animals around this time, and I want them to be safe. I have a very strong protective urge that centers around those in my "circle", including my family, pets, friends. I guess I just feel the need to take care of people. It's been bred into me since I was a young'un, living in such unpredictable, dysfunctional environments and being the oldest it made me the caretaker of the kids… and of the adults, after a fashion. That urge has never died, though it has matured, become tempered a bit and and much healthier. Learning about boundaries and implementing them in my life has made a huge honkin' difference, though I know I still have stuff to learn in regards to that. As far as the cats go, they get their freedom tomorrow. As for me, freedom comes in a couple of days, Monday specifically. Unfortunately, the morning I leave is the day of the afternoon that Corey comes home. We're gonna miss each other like ships in the night and I won't see him for over a week by the time I get back, which is gonna be kind of a bummer, but it'll be great to see him when I get back.

And that is a slice of my life as it lays right now.

Today is the 8th anniversary of The Accident. Back in 2006 I was attending a small Christian boarding academy (high school) about 4 hours away from home. There were several of us kids from Yuma there, so the parents had worked out a carpooling system for the occasions that we came home such as holidays or Home Leaves. This particular event was a home leave, and several of us piled into the Astrovan owned by a good friend of my family, whose son and granddaughter both went to school with me. The other Yuma kid declined to go with us because he had some other plans, but a Korean foreign exchange student that was good friends with the son and on the same Acro team as the son and I joined us for the trip. He was excited, because he wanted to see more of America before he graduated and went home at the end of that school year. He couldn't stay and tour afterwards, because apparently Korea has a law that mandates all young men to do a certain amount of military service once they are done with basic schooling, and I'm also pretty sure that he didn't have that kind of money.

The stretch between Phoenix and Yuma is pretty barren and empty, but there is a town almost exactly halfway between the two, and we stopped there for snacks, bathroom break, gas, and Fred, the dad, put air in the van's tires because he thought they looked a little low. (There are SO many details that I'm omitting, but I don't feel like typing that much, and it would be a small pamphlet at least if I did.) It was not too far underway from that town that the back left tire blew out, and the van swerved then rolled and flipped several times. I was hit in the head with something flying around the interior. (I think it was the old school portable tv, the heavy ones? Or maybe it was some sort of tack because Fred hadn't emptied out the van from the last time he had been at the stables to tend their horses. I don't know; I'll never know.) The blow to the head caused me to lose consciousness and go blind for a period of time I estimate to be about half an hour, 45 minutes maybe? I was very devastated because I thought I couldn't read anymore. (A famous line/joke from the experience is when I was led to Fred after being freed from the van and I told him I was blind. I was crying about how I wouldn't be able to read anymore, and Fred comforted me by saying that he would read to me. My response was to wail, "You don't understand-- I really like to read!!" LOL)

As far as injuries go, I was blind and had a severe concussion, was having an asthma attack, had an internally bleeding mushy spot on my skull from being hit, whiplash, of course, and there was some injury to my ribs as well. Oh, and I cracked a toe. The granddaughter, A, had unbuckled her seatbelt to lean forward and grab something just as the crash happened, so when the glass window from the sliding door popped out she was thrown through the opening during one of the flips or rolls and then the van rolled over top of her. She was Life Flighted out of there (as as I) and ended up in ICU for a week with a lacerated spleen and a fractured pelvis, along with the requisite whiplash and concussion.

The two guys, J and the Korean S, had bad whiplash and S had a bloody nose. I'm not sure if they had any other injuries, but they didn't say so, and they still went to play in the tackle football game a day or two later that they had been planning on. They are both big guys-- tall, solid, lots of muscle, and sturdy-- so they were an important part of our school's team and they didn't want to let the team down by not playing. *smh* Men.

Fred threw off his lap belt when the van began to swerve and leapt into the space between front seats to help control the van, so he was unbuckled and tossed like a salad as we flipped to and fro. He also ended up in ICU for a week, but they didn't fly him out because he looked okay until after A and I flew away. He collapsed and they ambulanced him to the Phoenix hospital as fast as they could, and all I remember now of his injuries is that his spleen exploded into a bunch of pieces. SO not good. He went into emergency surgery, obviously.

When I came to after the crash itself, I was blind (blackness, everything blackness with purple lightning bolts shooting through and across in every direction) and disoriented and sooooo tired and sleepy. I tried to unbuckle my seatbelt for a minute or two but it was too hard and I couldn't do it, so I began to drift off to sleep. Turns out I was the only one in the van because A had been thrown from the vehicle, J and S jumped out as soon as the van stopped, and Fred jumped out to help as well. We landed on our side, with the driver's door on the ground, and the window beside me had broken but the blanket I was using as a pillow while I napped kept the broken glass from reaching my face or neck.

The van was steaming as it was resting and J thought it was smoke, that maybe the van was going to explode and I was still in it. Everything smelled like gas. I used to love the smell of gasoline, now I'm not so fond of it. J came in and kept me awake with talk, which annoyed me to an incredible degree, while he cut me out of my seat belts. What had happened is that Fred's lap belt got tangled up in my shoulder belt while everything was being shaken up, and I couldn't see to undo it and J felt that it would take too long. The van was about to explode, remember?! Because of my weakened state (concussion, asthma attack, shock, etc.) I was unable to lift myself out the hole above me that had been the sliding door's window, so J kicked out the windshield and took me out that way. I jokingly flutter my lashes at him and swooningly croon, "My hero!" when that story is told around him, hehehe.

There are a ton of funny and touching stories that go with all of this, and maybe I'll share a story every day or every other day this week in honor of Life and Second Chances. For right now, I'll sum up by saying that even though there were some scares and lots of camping out in the ICU waiting room, we all survived that harrowing experience with very little in the way of long term damage. It's practically unheard of! We were and are very fortunate, and that is why Fred and I like to Celebrate Life on our Anniversary, though the others (J and A) don't see the point or enjoyment of it and choose not to celebrate it. J feels very guilty because he was driving, but it could have happened to anyone. Really. A lives far away, and S is back in Korea, so… Actually, I think they are both in Korea, come to think of it! A married a military man, so…

Anyway, if nothing else at all I learned the value of every split second. We carry on as though life is assured, and rightly so I think or else we would be paralyzed by the thought of impending mortality, never enjoying a thing or being productive, but it is the realization that life and consciousness can be taken away in the space between two breaths that really gives context to the value and delicacy of life itself. For instance, yesterday was David S's birthday. My adopted dad who died of cancer last year. Yeah. The birthday of a dead man whom I loved dearly, and then the next day a Celebration of Life, another "birthday", if you will" with other people that I love dearly, who are all still here and kickin'. It's just so… puzzling. There doesn't seem to be much rhyme or reason to it, except the certainty that

Life will end. Yours, mine, your fish, the Pope, and certainly that pretty caterpillar you saw last week… our lives will inevitably cease at some point. Mine could have stopped on October 25th, 2006, but it didn't, and I'm very grateful for that. My essence, the core of who I am, my conscious soul or whatever, that could be snuffed out by any number of things even while I type this blog post. But I'm still here, so I'm gonna enjoy it and try to be a good person and make life as good as I can for those around me who are still going as well. It's as much of a goal as anything else, right?

Happy Anniversary, Life!

So it's been a while! After a while, news builds up and becomes all the newsier, meaning that I'm really doing everyone a favor by waiting a long time in between posts to make sure that I actually have something to talk about. The problem is that life just keeps happening, no matter whether I'm writing or not, and as it all builds up and builds up the thought of writing about it becomes more and more exhausting until I've totally talked myself out of it! Or sometimes I'll talk myself into it, but forget the most important parts lol.

So what's been going on with me? Well, I saw the head doctors, both of 'em (neurologist and psychiatrist) and I'm trying out two new meds. The one from the head shrinker is a mood stabilizer for Mood Disorder Not Otherwise Specified (because I'm too complex to just label with bipolar or manic-depression, of course!) and it has the potential to make me quite depressed. I've been feeling that for sure lately, though not entirely certain it's med related. I was having problems with depression at least a week before I saw the psych, and it only got worse for a while there but it feels like it's easing up some. Now I'm struggling with sleep problems. This could be related to an interplay between the new psych med and the mild sedative from the neurologist to keep me from twitching, but for a few days at a stretch now and then, and for past several days right now, it seems that I can't stay asleep but I can't stay awake either. The result is a groggy, drowsy, constantly nodding off lady who wakes up to find herself doing random things or finishing sentences that make no sense at all and have no bearing on what's happening around her. I'll have a thought process going on that is much like the thought processes you have in dreams, so very disjointed and unrelated to reality, but I'll come back and "wake up" halfway through or right at the end and say the last part out loud… but realize as I'm saying it that it's thoroughly nonsensical. I was talking to Bob Cat earlier today before hopping in an Epsom bath for my legs and was saying something about how it wasn't going to happen until I'd swallowed enough jade. It made perfect sense until I woke up at the jade part and finished my sentence, with a mental image of myself downing handfuls of jade beads like they were prescription pills! Crazy.

So there's that, and I feel like I'm going crazy and my days are just a muddle of nonsense, but when I'm "sober" I'm doing quite well. There's a storm front that moved through last night and today and I am definitely feeling it! I'm taking my regular strong pain killers, plus a couple extra (since I now have that luxury when needed), and drinking an ale now and then to help give the pills some "oomph". I know you're totally not supposed to do that, but even with the really strong pain meds I'm at "take me to the Emergency Room" pain levels, which is saying something. Can you imagine where I'd be at should I not have the good medication that I finally have? I'd be done for.

I still think about the last few months before I found this pain doctor, and how excruciating they were, and how I was honestly dying. My body was under so much stress from the unceasing, incredibly high levels of pain and other symptoms that my vital strength was just… slipping away. Fading. My organs were shutting down, bit by bit. Blood tests tell me that the functioning is good, so I'm happy about that. I'm mostly happy to not feel like I'm fading away, to feel like even though I'm still sick and being "attacked by gremlins" (as we've decided to euphemize the situation) and that won't likely change in the course of my life that I can still participate and be a real person, not just a fading ghost or a memory of the friend someone used to have.

I have had some interesting new health news from the past few weeks of dr's appts, and that is that I have a double stranded DNA, whatever that means. I guess I have to do some more research on that one and what it can mean, but one of my lupie friends assures me that it can mean any number of things. Then there's the whole Mood Disorder thing; that was a bit of a surprise! All of the doctors and specialists I've seen in the past couple of weeks, though, have totally and completely supported my EDS theory and my work towards going to Tucson to see the Rheumatology Department there for a diagnosis, if possible. The pain doc brought up another possibility, due to my "testing positive" for Lupus again (from blood tests done just last month), and that is arthritic lupus, rather than the kind that gets in there and destroys your organs and whatnot. He is seeing more of an arthritic type of involvement with the pain than simple fibromyalgia can account for, so we'll see. I have been dealing with a very strong and potent case of pitting edema in my lower legs, ankles, and feet as well as intermittently in my hands and forearms, but I have a doctor's appointment next week to see if that's of any concern at all. 

I started physical therapy yesterday, and I can tell that it's going to be grueling but beneficial. I'll have to keep strong boundaries with my therapists and not completely destroy myself trying to please them, as I have energy barriers that most patients don't have to deal with I think, but my therapist is very understanding and good to work with, so I should be fine. We'll be focusing on my back, and also on exercises to help me lose the weight that I've gained this past year from the meds, improper diet, and a sedentary lifestyle. They will be very valuable, as I'm hard pressed to find exercise that are effective yet low impact and considerate of my physical de-conditioning. I realized during my evaluation with my therapist that I'm really a lot weaker than I've ever been.

Oh, one more "exciting" thing that happened is that my disability claim was denied. This was rather expected, as the odds of getting approved the first time through are notoriously low, but I was hoping that we might be one of the lucky ones. The "Tiara Fund" fundraiser that I started has really really helped to take some of the immediate financial pressure off of us that we were facing, and so has the monthly couple-of-hundred from BioDad, but honestly the financial difficulties haven't eased up at all. If anything, they've increased since my doctors keep adding more and more specialists to my treatment team, and while that's a good thing I just don't have the money for all of these appointment copays and the bills that follow after and the prescriptions I need to get by!  Just looking at the funds raised is kind of laughable, because what difference is $400 going to make in the grand scheme of things? And yet… it lifted a heavy burden from the Robot's mind because we were not relying solely on his paycheck for basic living expenses and medical funds. He makes enough to keep us in house and home, but that's it. If something unexpected happens, or if I need some money for medical stuff, that's a straw that'll break our little glass camel's back. Don't feel sorry for us-- we're doing just fine, and there are plenty of folks who have it much tougher than we do, I know that. It just does get tough sometimes, living with the constant stress of "how in the world am I going to pay for this?!", especially when the "this" is necessary medical help.

Anyway, enough of medical and financial woes! Exciting stuff, exciting stuff… this is getting hard to do, as I'm still in that "drifty" state where I keep nodding off to sleep in the middle of typing. It makes my words a little unpredictable in spelling, and also the content of my thoughts a little outrageous. That last sentence, for example, almost came out as "It makes my outfits a little unpredictable, but they benefit from it in the long run." I had an image of this radical blue tiger stripe tie dye shirt-dress that I was wearing instead of my usual more boring clothes, and I was genuinely excited for a moment about opening up the package and wearing it for a minute… until I realized it wasn't real and that I was supposed to be talking about words. Gaaah! Focus, woman, focus!

I have a massage in just a few hours, which can't come soon enough, as the weather that passed over brought me to the ground with pain and swelling in my legs. I tried to get Drogo to rub my feet, ankles. and lower legs, and he did so briefly and reluctantly, but he really dislikes massaging. It's like pulling teeth to get him to rub my back or feet or something. Doesn't matter that I could really, really use it or that he could be "fixing the problem" as he so loves and is deeply motivated to do, he just doesn't like it and is bored by it and so I go massage-less most of the time. I often wake myself in the night with my arms lifted above my head, massaging and stroking my hands and forearms, or my face and head and neck. It's kind of weird, but whatever. I'll get by. I always do.

I'm seriously flagging here, so I'll wrap things up by sharing the most adorable thing EVER! My friend the Artist went to a Comic Con  a few months back, and I was super super jealous because she got to meet the most amaaaaaazing people within the geek culture and see the coolest stuff, etc. etc. etc. So she paid to have an artwork commissioned for the Robot and I, but it's taken this entire time for the artist to get around to it I guess. Today she posted it on my Facebook wall, and she had some really neat things to say about it in the conversation we had around the picture itself. Another friend of mine also commented on our marriage in a very positive way, and it was very encouraging since I've been feeling a little discouraged about our relationship lately (a lot of it fueled by chronic stress, and insecurity over my appearance now that I've gained so much weight). We even had a "talk" on Sunday, which was mostly me talking at him and explaining what I was feeling and why and citing some examples and him explaining his perspective and me reordering and reorganizing my thoughts around this new information and realizing that we're actually okay after all and it was all fine and I was just breaking down under the stress is all but he didn't mind because he's awesome like that and just bore up under it patiently like he does and walked me through it. I could wish that he were more passionate in daily life, more demonstrative of deep affection and emotional displays, but it is the solid bearing up and the refusal to be flapped and bothered and moved out of place that signals his love to me, strong and sure as a beacon. I just sometimes lose sight of his particular version of affection and passion, start comparing our relationship to "others"… and let me tell you something: that doesn't work. Ever. Even if I were healthy and we did have the sunshine and rainbows that we so long for (because we've walked in a miserable, cold, rainy mist for so long now!), every relationship is different and looks different and functions differently, and my main concern ought to be "Are we healthy? Are we okay with us?" Because that's what's important. It's not important whether or not he does _____ like so and so does (although that would be super cute and sweet and nice), it's important that he is still here, and not going anywhere, and that he still thinks I'm pretty and that he believes that I can still do things but he also doesn't hold any illusions about what I can no longer do and he keeps me from sailing off of a cliff with the best of intentions to carry me forward. The picture that my friend commissioned, it's… well, it's perfect. It's us. And seeing it, reading her description of her hopes for its creation, really helped to remind me that what we have is perfect for us, and we have made no mistake in coming together and creating a life that is a blend of the two of us. We have done just what we needed to, and that's beautiful. We're beautiful. And seeing us from an outside perspective did a little something inside of me to push away some of the stress and make a cozy little space where I could just nestle down and really see and appreciate the beauty of what and who we are as a couple.

Without further ado (because I'm totally rambling now), I give you… the Robot and his Lady!

My friend the Artist (not the artist who drew this), says, "I know the one thing I really wanted out of this, was to show that through the ups and downs of stressing over bills, you battling your illness and Corey stressing over how to handle things, that no matter what you guys can make it. And together you guys make a great team, warriors and lovers, conquering any obstacle that comes both your way. I remember paying her during the time when I was up in phoenix when you were going through at lot when I was reading your blogs. So I figure this would be a perfect gift for you guys. and I am very happy how well she was able to illustrate in what I wanted." My other friends said, "Oh my God this is perfect," and "JFC that is so Corey. Look at that leer."

In addition to those little gems, the "this is perfect" friend and I were having a conversation and my sex life came up as a topic. She had this to say, which (combined with the picture and sentiment behind it) totally cemented my faith in my relationship and its unique power and beauty.
"You two will be fine. I personally find that sex is best with a person you already fiction well with outside the bedroom, and you two are made for each other. Inviting someone to come over and play is a unit decision, a group activity, and only works because you two are already perfect together on That level. You'll be fine."

Yep. We are perfect together, and no matter what we can make it. We are warrior-lovers! The Artist also said, "And during the time I was reading the blogs up in phoenix, I felt really sad and helpless not being able to somehow get rid of the depression and the stress that you were going. So I figure I ask this, that way it shows some happiness that it can bring about through trouble times. I mean I can choke illness out of people, but I do much best to try to create something or think of something to present as a gift through help of others such as this artist or form a gift by myself. And of course I did my best to pay whenever money I had for the sushi up when you had your doctors visit. But yeah, I am going to cry up a storm here when I keep talking like this. Anyways you have amazing friends that have your back, how about that :)."

And she's absolutely right. With the Robot/Drogo firmly ensconcing me in his arms and my amazing friends at my back, there is no way I can not kick ass as I live life facing the gremlins. My various diseases may never go away and they may never be totally tamed and managed, but I'm not going away or being tamed either. I will continue to wear my tiara to doctor's appointments and to paint my walker bright colors to cover the shame and anger I feel at having to use it. I will prevail, and I will do so with or without this elusive thing called "sleep"! For now, though… I'm going to try to catch some. :)

I'm so behind on keeping up with my favorite blogs! I'm cherry picking the ones that I want to read right now, but the list just keeps getting longer and longer and I'm not certain I'll make it through the entire set before I'm asleep again. (It took me nine hours to check my Facebook notifications the other day because I couldn't stay awake long enough to check more than 3 or 4 at a time!)

I've been fighting fatigue. Bad, bad fatigue. The kind of fatigue that you don't actually fight, you just accept as reality and accommodate as much as possible, because the need for sleep is overpowering and overwhelming and can come on you with just a moment's notice. There is no way I can drive in this condition, as I find myself falling asleep in the midst of the most ridiculous, mundane tasks-- eating a bowl of cereal (spilled all over myself because I nodded off), going to the bathroom (almost fell off the toilet), standing in the kitchen and holding a conversation, pretty much any time I sit down for anything, and even a tad while out for my evening walk with Drogo. It's far, far past ridiculous and well into debilitating. Let's just say that this is further proof that my body refuses to do anything halfway.

It's a combination of the high levels of pain killers that I'm on and the other new meds and also the shifting weather of this time of year. I know it's not just the pain meds, as I went several weeks a little more tired than normal but not slammed with fatigue like this. It's always hard when you have to make adjustments to the regimen, but I'm confident that things will get sorted out in time. It's just the waiting for it all to settle down that's difficult. I feel like I've hardly seen any of Drogo at all, between his odd work schedule and my complete inability to stay awake for more than 15 minutes at a time. We may live in the same house but there's so much more that makes up a relationship and I miss him terribly!

The pain, however, has been good. I wasn't sure I'd ever be able to type those words again, but there they are! (pop the sparkling cider, throw the glitter and sparkles and confetti- careful not to get it in the cider!- and call in the dancing girls!) Last week was still very painful, but bearable, but this week has been, well… nice. Maybe it's because I've been asleep so much that I haven't noticed the pain? I dunno. A funny phenomenon I've noticed, though, is that now when my pain dips down below "I'm in extreme pain" levels it's almost like my body then ceases to realize that I'm still hurting. I mean, it's there, I can feel it, but suddenly it's not important anymore and now I expect myself to function at a higher level. Does that even make sense? I suppose it's because I've been in crazy high pain land for so long that dropping down to less severe levels feels like a picnic. Like a paper cut vs. a broken arm. (Well, okay, to be more realistic, like a stitched up gash vs. a broken arm.) And I honestly don't know what to do with myself. I feel like I'm malingering now if I insist that I'm still in pain and need pain killers, because I'm so vastly better compared to last week even. I know intellectually that it is continued, routine use of the pain meds that will keep me at these levels and hopefully take me down to even less levels of pain, but I do feel like a medicine chaser now, I do.

All of this brain stuff that goes along with being sick… it's too much for me to figure out. I need a shrink to help me wade through all of this and made sense of it.

Even as I type this, I feel myself flagging and growing more and more tired. I expect that I'll be close to napping again here in a few minutes, so a few quick updates…
-The craft business is getting off of the ground! I've made a friend here in town who is going to go in on it with me and we'll share the table. She's sold before, so there's the benefit of experience, plus she can give me a ride and load/unload the table, which I'm unable to do. I've been busy making all sorts of adorable little things to sell, and I'm excited.

-My neurologist thinks that I'm definitely doing the right thing in pursuing an EDS diagnosis down at University of Arizona, and encouraged me to keep going for it. I see him again in 3 months, and he put me on a medication that should help with the twitchies a bit. That's one of the meds making me so sleepy.

-My psych put me on an antipsychotic to help stabilize my mood and keep me from hitting those more manic-type highs, along with refilling my antidepressant. The term he used is Mood Disorder Not Otherwise Specified, because my case is too complex to be cut and dried anything. He is going after genetic testing to see how I metabolize medicine and if I'm missing any enzymes or anything that might be altering the optimal flow of medication in my system. That would potentially also explain a lot when it comes to my needing crazy high doses of painkillers to make any kind of a difference.

-This weekend is a party/get-together for the BDSM community here in my town, and I'm super excited to attend. I've never been to one yet, as there's not a whole lot that happens in our scene here (it's pretty small) and Phoenix or San Diego is a long way to travel for us right now for anything other than necessary doctor's stuff. Pleasure trips are out of the question. I am going to the secondhand store tomorrow to scrounge up something super sexy and smokin' to wear. Drogo will be wearing his standard jeans and a t-shirt, I imagine. I am nervous, but I know a few of the people there, and Drogo will be there, and I can leave whenever I want so it's not that big of a deal. I'm thinking that maybe we'll finally find a willing lady to play around with Drogo and I once in a while. It's been a long, unfruitful search so far, and every possible candidate has simply left me hanging after stringing me along for a while. If this is what men go through when trying to woo women, I feel sincerely sorry for them. It is frustrating beyond all reason to have a girl act as though she is interested and spend some time getting to know you and then BAM! You never hear from her again. She doesn't return calls, emails, texts, nothin'. No explanation. I don't get it. Women are confusing, bottom line. Poor men; you have my sympathy.

-I found a great supplement/multivitamin that is soy and gluten free, so I've started that up to nourish my body while it fights for health. I realized that I wasn't supporting it in that way, which is just silly because I need supplement support more than the average person would! So I'm pleased about that, because it also keeps me from having to buy all of the vitamins and such I was taking separately and saves me money!

-Disability is still out for review. I intend to call sometime this week and check on it to see about how much of a way we've got left, if they can tell such things.

And sure enough, my eyelids are drooping, it's getting hard to focus my eyes, and my head is getting fuzzy. Time to wrap this up and hit the sheets, the nice quality sheets that I scored for a super low price thanks to that Kohl's cash they send out and a friend's coupons that she sent me. They are the nicest sheets I've ever owned, and I love sleeping between them! Next thing will be to get some decent pillows, because ours are completely flat and lumpy and just worn out. Not good, not good at all. Pillows, and then a pillow top for the mattress, and then a good sturdy comforter for the bed. That's the plan for the next few years. I'll have to do it a bit at a time, but it'll get done. A good night's rest is essential to daily functioning!

Remember how I mentioned that it's Invisible Illness Awareness Week? Yep, that's still going. And I did a thing, because other bloggers are doing things, but I really didn't want to type it up on both blogs of mine, so I did the thing on the more pertinent blog and now I'm linking it here.

There's been a little quiz/survey/questionnaire thing going around entitled, "30 things you may not know about my invisible illness", and I went ahead and filled that out over on Honeybee Chickadee. If you'd like, pop over and give mine a read. Hopefully it can shed some light and insight into what life with an invisible illness (or three) is like!